Nhi from NY - Dx June 2016

[Bonni Hess]

Dear Nhi, I am finally getting a chance to catch up on my ASPS communications after being away from the computer for much of the summer due to travel, vacation, and visiting company. I want to belatedly express my igreat happiness for your very good and encouraging 3 month chest CT scans in June, and am holding very tight to Hope that the Sutent is continuing to stabilize your disease and prevent new mets and increased growth of your lung mets. I am grateful that abdominal and pelvic scans are being included in your 4 month chest CT scan schedule in October as in our experience with Brittany, chest mets can appear stable giving a false impression of disease stability, but with this unpredictable disease other mets may appear/develop in other parts of the body thus necessitating more than just regular chest CT scans to adequately monitor disease progression. I Hope that you are continuing to tolerate the side effects of your Sutent treatment relatively well, and that you were able to enjoy a wonderful summer shared together with family and friends. I will be anxiously awaiting your 4 month October scan results when your time and situation allow, and am sending my most positive thoughts and very best wishes for continued GOOD NEWS!! With happy hugs, special caring thoughts, healing wishes, and continued Hope, Bonni

[ntran727]

Hello,

I just had my 4 months scan, this time of the CT chest/abdomen/pelvis with contrast which again shows stable nodules (about 2mm in size) scattered in both lungs with NO new lesions. The CT abdomen/pelvis was clear with no lesions. The previous scans showed about 15 lung lesions or so but they didn't mention the exact number in this report, just said that there were no new ones.

I am still taking sutent at 25mg daily with occasional 2-3 days off (started it in December 2016). I can't believe it's been almost a year already. Side effects are the usual "hand and foot" syndrome although mostly just affecting my feet, but is very manageable with the right shoes (I wear the Bob's brand with memory foam cushion and they are so comfortable). When my feet gets very callused, I use the foot filer which works well. I was getting rib cage pain especially in the sternum a lot more frequently over the summer months sometimes up to 3-4 days out of the week. It usually occurs at night and can be very painful and debilitating. The pain suddenly stopped for the past month and I only had about 2-3 episodes or so. I was also getting a lot more diarrhea than I was before and lost some weight because I feel like I am not absorbing enough. My weight is stable now again though.

I saw my oncologist today. We decided that I would stay on the sutent until it either stops working or until I can't tolerate it anymore. I am tolerating it very well though, so I think I will stay on it until it stops working. My next scan will be CT chest 4 months from now. If it's stable, then next scan will be 6 months out.

Hope everyone is doing well!

[Olga]

I am so glad to hear that the response to sutent is continuing and that you tolerate is well. Thank you for an update.

[Bonni Hess]

Dear Nhi,
It is with greatest joy that I read your thoughtful update with your VERY good and encouraging scan results which showed continued disease stability and no new mets in your chest/abdomen/and pelvis . I know that your multiple lung mets are relatively small, but was the radiologist able to determine if the Sutent has caused any shrinkage/disappearance of the mets? You said that your next chest CT will be in 4 months, but as I said before, based on our extensive personal experience, I personally feel that you should also have abdominal and pelvic scans at the same time as your scheduled chest CT since this insidious disease can appear stable in one area of the body while progressing in another area as occurred with Brittany in 2004 when her chest scans appeared stable, but a liver met was unexpectedly found on the portion of the chest CT which fortunately just happened to show the top part of her liver, or else we probably would not have known about the liver met until it became symptomatic and possibly too late to successfully ablate with Radiofrequency ablation (RFA) as we were very thankfully able to have done after the liver met was diagnosed. Ever since that very concerning and enlightening experience, we have always scheduled regular complete chest/abdominal/pelvic scans, and never just a chest CT. Also, I know that you had a brain MRI in May which very thankfully was clear, but I am wondering if you have also had a full body bone scan which should be done once a year? Too many doctors take the approach that if the disease appears stable in one area of the body that is being monitored with scans, i.e. the lungs, that there is no need to scan other areas of the body which unfortunately is an erroneous attitude and not the case with ASPS. I am very grateful that you are continuing to tolerate your Sutent treatment well and with manageable side effects. Your thus far successful response to Sutent is very encouraging and especially for those other ASPS patients who are also currently being treated with Sutent or who are considering treatment with it. My most caring thoughts and very best wishes for continued treatment success continue to be with you. Take care, have a wonderful upcoming Holiday season, and keep in touch with the Board as you are able.
Sharing the great joy of your very good and encouraging recent scan results with happy hugs, special celebration, warm and caring friendship, and continued Hope,
Bonni

[ntran727]

Hi everyone,

It is that time again for my scans and oncology appointment which I had today. I only had a CT chest this time as the rest of my scans are not due until May. The Chest CT is once again stable with the same 2-3mm lesions in both lungs, no new growths and no changes in size. This is the 3rd scan that has shown stable disease over the course of the past almost 1 year, so this is great news!

I am doing okay on Sutent, still taking 25mg daily with small breaks here and there, about 4-5 times a month on average when I feel it building up in my system. It manifests in different ways from feet pain to diarrhea to chest wall pain (the same symptoms I have been dealing with). The worse is the chest wall pains I would say as it is pretty awful when it comes on. Ibuprofen and heat pads help and I am usually back to normal after about 12 hours per episode. They happen severe about 4-5 times a month and mild about once a week I would say. Because of this side effect, my oncologist is going to try to lower my dose to again to see what happens. I will be taking 25mg and 12.5mg every other day and get scans again 3 months from now including another chest CT as he is changing my dose.

I will also be getting my annual MRI brain, 6 month abdominal/pelvis imaging which we decided on MRI instead of CT this time to reduce the radiation, plus it would evaluate my primary site (right buttock) better. We spoke about the bone scan which he does not think is necessary as the bones are also visualized on CT/MRI (aside from my extremities). I did try to push for it, but since my disease is pretty stable and I don't have any pain in my extremities, I felt that this was okay for now as he seemed to really think it was not necessary.

On another note, my husband and I are looking for a surrogate now and hopefully will be able to transfer our embryos in a few months to have a baby (or babies). I am in good spirits, working as usual, and I am fighting as always!

I hope you are all doing well, I have been following most of the posts but just have not been responding to them. Just want you all to know that I am thinking of you.

Take care :)

[jenhy168]

Great news Nhi for the stable reports! How long have u been on sutent so far?

I've had lots of chest wall pain comes and goes...can last for a week or two weeks sometimes...Unfortunately I just deal with the pain since I feel like regular painkillers don't work. Vicodin does work somewhat but that's so temporary so I might as well just not take it. Sometimes the pain radiates to the nerves in my back, and so if I get a massage on my back it sometimes helps.

Good luck on finding the right surrogate :)

[D.ap]

Nhi

So happy to hear of no new tumors and stability !
Hope you are able to fine tune a remedy for your pains.


The baby journey you are looking to embark on sounds truly beautiful ..

Good to hear from you .

Love
Debbie

[D.ap]

Is your doctor thinking the pain is caused by a rebound /withdraw type pain from the up and down dosing of the sutent ?


http://www.ascopost.com/News/17458

[ntran727]

Deb, my oncologist didn't say what he thought about the mechanism of what causes the pain, but he feels that it is surely a side effect of the medication because if I stop it for a few days, the pain goes away. I feel like it reaches a certain level in my body if I take it for a continuous period of time, say about 2 weeks straight without breaks, then I get a lot more side effects. I just need 2 days off and then it resets again. Jen, I have been on Sutent for a total of 16 months now, starting at 37.5mg for 1 month, then cut down to 37.5/25mg alternating for 2 months, then 25mg daily from there on. I am currently on 25mg/12.5mg alternating and it has been a world of a difference. I have so much more energy, no more rib pains, and even my feet/GI side effects are much better. I am worried it will grow at this dose, but my next scans are in May so I will find out soon.

I have also found a surrogate, and we are starting the process soon! If everything goes well, I will be a mommy by this time next year!

[Ivan]

Good idea regarding the surrogacy. Sadly, in some idiotic countries like Canada that's illegal. I suppose in the US it's state by state.

[D.ap]

Nhi
Thank you for the explanation of your dosing..
I’m glad it’s treating you well.
There was talk back in the early forum days of micro like dosing being as effective as full doses?
I’ll try and locate that discussion and post .

The surrogacy sounds wonderful .

Thanks for checking in and congratulations on your parental endeavor : )

Love
Debbie

[jenhy168]

Happy to hear you're doing well on the updated dosing :) And good luck with the surrogate process!

[ntran727]

Hello everyone,

I got my MRI brain (annual), MRI Abdomen/Pelvis (6 months) and CT chest (3 months) last week and saw my oncologist yesterday.

MRI Brain, Abdomen, and Pelvis all clear. The site of the tumor is also clear with no recurrent growth.

CT chest stable with same amount of lung nodules at the same 2-3mm sizes.

Next CT chest is scheduled in 4 months, and I am to continue on the lower dose at 25mg and 12.5mg alternating.

Side effects are very minimal and almost none. Chest wall pain happened 3-4 times in the last 3 months vs. weekly, so much improved!

Very good news and encouraging that I am still stable on the lowered dose. My hopes is to get to 12.5mg daily, maybe next time if the scans continue to stay stable.

Take care everyone :)

[D.ap]

Nhi

Great news all the way around !
Are you still on thyroid med?
Thank you for sharing the great news.

Love
Debbie

[ntran727]

Thank you Deb! Yes I am still on the same dose of thyroid medication and my blood work has been stable.